A rather large hunk of time has passed since I last wrote, nearly 19 months. And I am still here! In August and September of 2012 I went ahead and did the Stem Cell Therapy (SCT) back in Boston. As great as my fears were, it wasn't as bad as I thought it might be. It was a challenge on the two days of chemotherapy, where the drugs essentially destroy your immune system prior to replacing your own stem cells that they took earlier. On the two chemo days I had to eat ice chips for about a half hour while the drug was being infused into my body; it was not easy, but it was not impossible. I had the support of wife, son and daughter there with me. The ensuing days were, to say the least, strange. I was given some hormones that must have been loaded with estrogen as I would cry over almost anything, a song, a thought, trying to talk with anyone on the phone. The male "ego" in me had a hard time accepting the crying, but I also found that it was an extremely creative time for me as well. It is an aspect that I would like to access more often.
I returned to Boston in the Spring as well as this last September. The prognosis? Basically, it didn't work. They wanted me to go into some clinical trials. On the the other hand, having been off any type of chemotherapy for over a year I feel so much better. The attempted cures may have slowed the progression of the disease, but they were debilitating in terms of my body and quality of life. That is where I am now. My Spokane oncologist, Dr. Hakim Kaya, can do one of the clinical trial drugs right here, though I would not be in a trial per se, I would just be in treatment. What do I want to do? Try another drug therapy and feel….. what? Would it extend my life at the expense of feeling good? Just how fast is the disease progressing? They can't say. Where the amyloids are attaching themselves are to my kidneys, my heart and my nervous system. I could choose, I would prefer they attacked my heart rather than my kidneys. The thought of doing dialysis is quite repelling. Dying from kidney failure is even more frightening.
At this particular point in time I am really choosing not to think a great deal about "the end". I am more focused on going to Hawaii in a couple of weeks and after that a trip back to Boston to see the kiddies and Ryan, going to Mexico for Brian and Amanda's wedding and then hanging out in LaPaz. And in the Fall, going to Paris! I really don't have any control over what will come health-wise, what will be will be. So I will put these hopes and dreams out there and continue to look hopefully forward.
